The difference between life and death...
Is being your own best health care advocate. Be an empowered patient.
Joey is a survivor of ADEMArticle posted on Thursday, May, 26th, 2011 at 2:07 pm
I never stop being amazed and touched by the stories that come to us through this web-site. The brave mothers, strong children, and newly empowered patients that have fought ADEM and won are extremely dear to my heart. It is stories like this one of Mary and her son, Joey, that remind me how important it is to be your own best healthcare advocate.
I can’t thank Mary enough for allowing me to share her story through NeelysMiracle and wish Joey continued health and happiness.
This is Joey’s Story, told in Mary’s own words…
When I was pregnant with Joey, we were told he could have Downs Syndrome because of the ultrasound results and that I was 39 years old. The amino was negative.
Then at Joey’s 4 mo. checkup I was concerned about his being floppy. The doc checked and agreed. He called us back later that day and recommended a muscular dystrophy test. That, too, was negative. He had torticollis (wry neck). We saw every specialist possible to find out what was going on. The neurologist ruled out CP, the eye specialist ruled out issues, the ear specialist ruled out hearing problems, they considered a metabolic disorder, etc. Very very frustrating!!
But, the doc did set us up with the Birth-3 program in our county. We had a OT and PT come to our house weekly, as well as a learning specialist. They did wonders with Joey and gave me great ideas for strength-building activities. However, it is very stressful to have to monitor every little aspect of your child’s life or milestones, being it strides ahead or setbacks. It made me over-analyze EVERYTHING! He eventually graduated from the program as was considered to have reached all the goals and milestones. Yeah!
But shortly after, he began bruising everywhere. After weeks of wondering, we took him in to the doc and the blood tests showed low platelets and low white blood cells. They made an appointment with specialists 2 hours away for the very next day. We monitored his blood counts on a weekly basis (not fun for anyone nonetheless a 3 year old). We were told that any cut or bloody nose is a medical emergency. We visited the ER on two occasions. Finally, we said that this is enough and something else needs to be checked into. They did a bone marrow biopsy. The results were negative for leukemia and other nasty degenerative diseases. Our family was down on our knees praising our Lord for these results. We were told to just keep checking the blood counts every 3 months or so. Eventually, they came up to more reasonable levels, but still not within normal ranges.
That month Joey turned 4 and boy did we celebrate (with rented blown up jumpy houses in the backyard and all). This child would get anything he wanted that birthday. It was such a relief that he was healthy again.
But that didn’t last long. The next month his voice got scratchy. Everyone commented on how cute he sounded. He really did! But then the following weeks were a nightmare.
On Monday I took him to the doc to check for strep throat or something like that. He threw up all night long.
On Tuesday something seemed odd and I took him to another doctor at the clinic and she said the x-ray resembled walking pneumonia. She prescribed antibiotics. His fever was high and he continued throwing up every 1/2 hour.
On Wednesday I called the nurse who then contacted the doctor. The nurse called back and said the doctor said viruses can be this way. He was getting worse and I was getting more worried.
On Thursday we went to yet a different doctor at the clinic. I questioned meningitis. She said that it did not appear to be that and said that it does take a couple days for antibiotics to kick in for walking pneumonia. I very reluctantly said “Well, okay… we’ll wait until tomorrow then.” That afternoon Joey couldn’t sit up, hadn’t eaten for at least 5 days, laid on the couch just listening to the TV because he refused to look at it. He was pale, lethargic and couldn’t even cry — just moaned barely moving his arms or legs.
The next day I begged my husband to stay home and come with me to the doctor for additional support. The doc decided to admit him. Because the SED rate test showed inflammation somewhere in his body, they decided to do a spinal tap. Guess what… he had meningitis. After 2 days at our local hospital, my husband requested the doc on call come to the hospital. This doctor, took one look and immediately made arrangements for us to be admitted to the Children’s Hospital 2 hours away. He hugged us, prayed with us and assured us that Joey will get the best care available. He had tears in his eyes along with us. So, at 1am I was in the ambulance and my husband was following. The longest 2 hour drive of our lives.
Joey was admitted to the PICU. They did MRI’s, CT scans, lumbar punctures, blood tests. It was unbelievable. I was in a twilight zone. I was numb. They hooked my boy up to machines, did PIC lines, IV’s, poked, probed. We had 11 specialist doctors attending him. Joey not only had meningitis, he also had encephalitis. The MRI showed large lesions all over his brain. One doc, who I did not like at all, said that he will have brain damage but did not know to what extent it would be.
We had numerous neurologists on rounds. One woman, our savior on Earth, said that she thinks Joey had ADEM. Others disagreed. There were heated arguments about this, says my husband.
(Side note: I didn’t witness this because I had to go back home and tend to my 12 year old son who broke his hand the next day at his football game.)
So, my husband called me when I was driving back to the hospital and said we had to make a choice.
1) to get steroids to counteract the ADEM that only one doc believed that was happening. The problem here was that the radiologist (top one in the US) said that he didn’t believe it was ADEM based on the MRI. No other docs believed that was ADEM either.
2) to just continue on with the antibiotics until he recovers.
When driving back to the hospital with my sons that Saturday, my husband called to tell me that Joey was no longer responding to anything. No finger movements, grips… nothing. I was beginning to panic. That’s when I saw the red and blue lights in the rear view mirror. The trooper said I was going 81 in a 65. I explained our situation. He said he has to give me a ticket anyway. I got out of the car and had a full blown panic attack in the ditch. My son freaked and called my husband who ended up talking to the trooper. He said that we need to get your wife to the hospital safely and would still give me a $300 or so ticket with 4 points. He did, however, offer to stay with me until I could “calm down”. What a nice State Trooper…I struggle to forgive this trooper till this day. By the way, I fought the ticket and got my points back but still had to pay the fine.
Anyway, we went with the ADEM treatment. My husband had a very strong feeling and peace about this. But, had to wait 48 hours to start the steroid treatment because if the virus was still in his body, the steroids could send the virus to another organ in his body.
So, for 48 hours we looked at our breathing corpse son and wondered what area of the brain is being “eaten” away now. We were completely helpless. We put it in God’s hands at that point. There was nothing we, nor the doctors could do but pray. I struggled with this greatly. What kind of God would put a child (and his family) through so many health issues over those 3 years of Joey’s life? Why would he do this to our child who we tried for 7 years to conceive? Will we ever be able to communicate with Joey again? Will he ever be the same boy? Will he have that spark in his personality? Will he see, walk, talk ever again? I would not wish this state upon my worst enemy.
Three days after the treatment, Joey began to respond. He laughed when my husband did something silly. He began to sit up, hold his head up, say a couple words. We saw that stinker spark in his eyes. It was then I knew we had our boys personality back. We can work with therapists again, but I wanted my little boy’s personality back again, and it was! Within a couple days, he was walking a few steps, watching Barney on TV, etc. We witnessed a total miracle!
A med student came in on his day off because he heard that Joey was being discharged already. Many nurses that hadn’t seen Joey for those 2 days stood in awe when they saw him sitting up and looking around. They were speechless. The neurologist who diagnosed ADEM and argued against all the other countless specialists came in and had tears in her eyes. I believe she herself said that this was a miracle. She happened to be wearing a Cross pendant that day, too. I took that as a another sign.
We were expected to be in the hospital for quite a long time when Joey was at his worst, but we were discharged 10 days later. He was walking awkwardly, talking unclear, and not eating much, but he was better. We were told he would need extensive therapy when we got home. I think we only went for a month a couple times a week. Remarkable!!!
We too, were asked to tell our story at a telethon a few months later. Going back to the hospital was amazing. We said hi to some wonderful nurses and docs who took care of our little boy. Joey remembered where his room was. This is amazing since the hospital was huge. He also remembers the wagon rides that we would take around the hallways. My husband said he got in pretty good shape walking those halls for countless hours.
To sum up, Joey was on many, many prayer chains. My husband has remarkable faith, where I sometimes lack. Joey is doing wonderful and has no brain damage whatsoever. The only thing we have noticed is that he doesn’t like alarms, loud music, ref whistles, basketball buzzers, car horns, etc. He has very sensitive ears and can hear nearly any little thing. That, is something we can live with… besides earplugs work great!
May God bless your family and Neely’s health.